Julie* was 22 years old, but she looked like a frail frightened 13 year old curled up in the hospital bed. She spoke like a petulant one.
“I don’t want to be here! I want to go hang out with my friends!” she yelled when I asked her what she wanted for her care. I was in her hospital room as a representative from the Ethics Committee, my goal to help relieve the conflict between her and the team of doctors trying to take care of her.
Julie had been admitted for endocarditis, a life-threatening infection in the heart. Again.
Last summer she had the same thing. Injecting drugs with contaminated needles will do that. Then the cardiac surgeon replaced the infected heart valve, but she never completed the appropriate amount of antibiotics because she decided to leave the medical respite (a place for homeless patients in need of care that could be given at home to live) early. And she never stopped injecting drugs.
I was prepared to spend a half-hour or so talking to Julie, but after about ten minutes, I was dismissed.
“I’m done talking to you,” she said, her arms crossed at her chest, her lips pursed. “Bye.”
After leaving Julie's room, I reviewed her medical records and read how she had been refusing antibiotics that were scheduled to be given three times a day. After some cajoling, which I imagined involved quite a bit of nurses’ and doctors’ time along with pretty pleases and cherries on top, she would usually allow the rest to be infused later. I talked everything over with an Ethics Committee colleague then called the resident physician who requested the Ethics consult.
The resident was suffering from moral distress. She wanted what was best for Julie, but was willing to settle for having her get IV antibiotics for six weeks. The medical team was considering discharging her to a skilled nursing facility, but that was unacceptable to Julie because it wouldn't allow the freedom she wanted. And because the team knew what Julie’s freedom meant, they were also considering petitioning the court for medical probate. This would allow them to detain Julie for necessary medical care because Julie didn’t have the capacity to make rational medical decisions for herself. They were reluctant to take this second route, the resident said.
Yet I could hear the sharp inhale of disappointed disbelief in her voice when I gave the Ethics Committee’s recommendation: Discharge the patient to medical respite for intravenous antibiotics.
“We just thought if we could get her through the antibiotics, she could live another year. Without them, we don’t think she’ll even make it a year. She’s like a 7 year old. We wouldn’t let a 7 year old make the decision to not get the antibiotics to save her life.”
Her reaction told me that she just wanted our blessing to do what the team really wanted to do to begin with, thus alleviating the guilt that comes with forcing treatment against someone’s will. I understood her distress. She wasn’t unusual. Doctors tend to overestimate our power to save lives. Even those who aren’t interested in being saved. We seem to forget that their lives are not labs where we can control all the factors. We forget that we can’t erase free will.
I agreed the patient didn’t have the mental maturity to make a rational adult decision. And sure, we could justify making the “right” decision for her. But to what end? Would we tie her to her bed and sedate her to be sure she didn’t refuse the full antibiotic infusion or, worse, pull out the PICC line that allowed them? For six weeks? Didn’t sound very ethical to me.
When it comes down to it, I don’t think the resident or any doctors who find themselves in situations like these are really thinking about the un-save-able patient. We’re thinking about ourselves and our need to do “everything” we possibly can do to make ourselves feel better. To absolve our own consciences. Because the truth is, we wouldn’t let a 7 year old go out and inject drugs either.
*name changed for privacy